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  • Anonymous
    Post count: 93172

    Hello everyone,

    I figured that since there were only 4 responses last Saturday, that Saturday would be a good day to answer–then there were eighteen messages today, and it’s only four o’clock EST! What follows is a long post regarding most of the messages I have been reading for the past two weeks. I have tried to “group” them by subject. You might as well print this one out, because otherwise you will have a headache!

    1. Who are we? Jake, Joan, Nancy (me), Debbie, Sue and Rachel are all members of the National Graves’ Disease Foundation. We are either members, officers and/or support group leaders. I think there are other members out there answering, but I am still waiting for them to sign in with me. We are all VOLUNTEERS, but work under the same guidelines. We do NOT give medical advice, do NOT make diagnoses. We are here to listen, and support, and hear you, and let you know that we understand. IF ALL OF YOU WILL INCLUDE YOUR E-MAIL ADDRESS EVERY TIME, we can sometimes answer individual questions directly to you. That frees up Bulletin Board space and everyone else’s time. I would ask the same of participants that is expected of members. Please DON’T PRACTICE MEDICINE. It is one thing to tell someone else to “up their this, or lower their that” and it is to say “I have been told that I can do _____
    with my medication”. We have worked for six years to establish dredibility within the medical community within which we have to function, and have finally attained their respect as well as recognition and referrals. I don’t want to blow that hard work. Thanks for listening to that…it is a real issue with me. I have to face those folks about four times a year, and boy, can they be enraged. They can also be VERY supportive, and that where we want them.

    2. Why do we need any treatment at all? What are the studies? I don’t want to kill a part of “me”. To the latter, I will respond that in most of our cases (the ones that are really quite ill), our thyroid is now the enemy, no longer our friend. It’s intentiion (actually it is the anti-thyroid antibodies) is to kill us, so we must intervene. There was a study about 50 years ago (pre-RAI) in somewhere like Rhodesia. The illness we know as graves’ had been identified, but there was no treatment available. Someone (an epidemiologist most likely) at leastl decided to keep track of these people over a ten year period. By the end of the ten years, most were long since dead from heart failure, and the few remaining were totally hypothyroid, and non-functional. The Protection of Human Subjects was not at issue, since there was NO TREATMENT AVAILABLE.

    3. The 90/10 rule. That is something I made up, but it is fairly accurate. Of one hundred percent of the people that develop Graves’ Disease, ninety percent of them will do just fine. They are diagnosed, treated (usually with I-131), feel lousy but functional for a few weeks and then get back on with their lives. It truly is NO BIG DEAL for them. We keep refering to them as the “lucky ones”, and surely WE would like to be as “lucky”. However, there is about ten pecent that remains, and that is where most of us with funky bodies fit in. There is some reason that we have such difficulty getting our medicine adjusted, have more, and more severe reactions to other things. It is not anything we do, or don’t do, that causes it, nobody knows. It is one reason for going to a physician tht sees lots of graves’ patients–they will have seen proportionately lots of funky GRaves’ patients, and will tell you that not everybody always adjusts as easily as they had hoped you would.
    when they tell you it is all in your head, you need a different doctor! They don’t see enough Graves’ patients.

    4. Stress – it is real, and so is the world we live in. Anything, and everything you can do to reduce the amount of stress (which is only change–we are the ones who only talk about dis-tress–there is such a thing as (good) eu-stress. It is a controversial subject in the medical field, but the well-informed doctors truly acknowledge it. The latest BB posts have been great. Examine you life, lifestyle, values, and do whatever you can. To all the questions about nutrition, there is nothing you can eat that will change your Graves’ (we’re talking about antibodies here), but the more nutritionally dense your intake is, the better condition your body will be in to heal and resist further insult.

    5. Iron – If you must take iron supplements, take them as far away from your thyroid supplement as possible. One in the morning, the other at night. The same goes for estrogen, and metamucil, and certain stomach-coating antiacids.

    6. Losing it – Every Graves’ patient has mood swings, some much more severe than others. They can be aggravated by such things as P.M.S., extreme or excessive life events, mis-diagnosis, treatment mis-managemnt. We have all heard horror stories that I won’t repeat here. BUT, the depression and anxiety are REAL, and should be treated as such. There are specific treatments for both depression and anxiety, and these include both medication and therapy. Both must be delivered by a professional who understands the links between the mind and the body. Mind over matter is one thing—mind over hormones is quite another. Therapy would help you deal with the issues of expressing (or accepting) anger, how to effectively deal with emotions gone haywire, and how to recognize real warning signals. For instance, I doubt that there is a single person reading this that hasn’t though that suicide might be an “out”. But thinking the thought in a passing manner is quite different than beginning to develop a plan. That’s what I mean by danger signals. NGDF is working very hard to have presentations made at the major thyroid meetings about the PSYCHO-NEURO-ENDOCRINOLOGY of Graves’ and other endocrine diseases. This can lead on into the discussion of memory. YES, we have memory loss. At least we don’t have Altzheimers. We can learn to manage our memories. The memory loss comes with both hyper- and hyro-thyroidism, and with those who have extreme, unrelenting difficulties with medication management. Some other time I will cite the reference of the study that was done by Dr. Arthur J. Prange and Dr. Robert A. Stern. It was just published this year in the Journal of Neuropsychiatry. That’s enough to get you into the medical library to find it. It probably isn’t on the Internet yet.

    7. Smoking – does not CAUSE Graves’ eye disease. There is a definate link to smoking and the onset of Graves’ eye disease, and to the continuing of it, but not a cause and effect model. If you don’t smoke, don’t start; if you do smoke, stop. This should give you plenty of motivation. There are many who never smoked that have Graves’ eye disease. There is another interesting link: smoking seems to have a bearing on the metabolism of thyroid supplement. That point was made by one the speakers at our national conference, and he sent me the article. Just another good reason to stop, and/or stay away from it as much as possible.

    8. Trauma – CAN trigger Graves’ disease. The first person to note this phenomonen in the scientific literature was Dr. Parry, at about the same time Dr. Graves’ was studying it. An elderly woman in a nursing home was being transported on a gurney, which got away from the attendant and went down a few steps, and the woman was thrown to the floor. Within two weeks she had what we wouldl now call “Full blown Graves'”. Most of the questions I get about trauma are for or from laywers who are seeking to settle a disability case. I now have a small file of their names, and just put them in touch with one another. (PS – “trauma” is another word for (dis-) stres).

    9. Which treatment should I take? NO ONE can make that decision for you. The best written material I know of is availablel from the Thyroid Society for Education and Research, located in Houston. Call them at 1-800-THYROID and ask for their white bulletin on the comparisons of the treatments for Graves’ Disease. It is excellent.

    I have to go right now. They are closing up for now. I will finish this up Monday. Like I said, I have been taking lots of notes.

    A quick catch up on me: I went to the eye surgeon in Atlanta yesterday. I am schedules for a decompression and bone implants in 12 days! My biggest concern is that my little grandchildren are supposed to come those four days. My daughter suggested that she come up, and we will stay at the MARRIOTT (her treat) the first night, and they will see me looking okay. Then I’ll have the surgery the next day, they will stay at the hospital hotel unit, and come visit me post-op., and she will bring me home and stay a couple of days. I don’t know how to spell “oowie”, but that’s what they will call it–a BIG oowie! The doctor doing the bone implant is Dr. CODNER. I forget his first name. Poor man, he may inherit my and my eyes for the rest of his practicing days. My regular surgeon is making noises about retiring.

    I will finish this post up Monday. I still have three pages of notes to go through.

    Anonymous
    Post count: 93172

    Thanks, Nancy, for the very informative post. Yes, I printed it out! After surviving a stressful month at work, I feel like I can take the time to be an active part of this BB once again. Sorry I stranded you for a while.

    Just for the record, I am one of the 90% that you spoke of. Maybe with all of the eye problems that I’ve had, other people would put me in the 10%. But, I feel like I’m one of the lucky ones! I’ve had excellent support and care from my doctors, my husband and family were always there when I needed them, and never once did I EVER consider ending it all because of GD! My work and joy on this world is not done yet! :)

    To update my GD friends: My last eyelid retraction (surgery #5) was a success!! I haven’t looked this good in years! (direct quote from my husband) ;)

    Wishing you happiness and energy! Debby

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